Hi. Thanks for all your posts it really helps.
Ok so a fantastic surgeon and informative appointment. Bit of a shock though finding out I have 15 at least tiny mets including one big one 4cm which he can operate on and will but the issue is the others! He thinks I should have wbr and then gamma knife if need it and surgery is always an option. Feeling scared but holding on to hope with these options. Cancer is truly unforgiving
Wow Carolina, sounds like hes on the ball, has he given you a few hours to think through what you want to do?
so maybe read a bit more and then decide? Maybe the website Lissa mentioned will have more stories of what went well for people?
at any rate, you know where we are and please keep in touch ( hope you saw my pms)
moijanxx???
Lissa I hope you don’t mind me jumping on and asking but I’ve been left with numbness in my left hand which is driving me mad. The specialist nurses seem to disagree. Originally it was diagnosed as mild lymphoedema but the swelling in my arm has really resolved (it was never markedly different anyway). The radiotherapy department say it wouldn’t be down to lymphoedema but is the chemo despite the fact it is only one hand??? I’ve had a total clearance on the left side and all the post surgical numbness has resolved a long time ago, this has appeared since. How did you finally get an answer? Xx
Hi Carolina. This is a bit of a shock but it’s encouraging that the consultant feels he can operate on the large tumour & use CyberKnife at some point. Sounds as if you’re very confident with hI’m & that’s vital. He’s also moving quickly & putting a plan in place for you. Hope that’s given you some comfort.
Lissa x
Hi Bottyboo,
I don’t mind you asking at all.
My nodes were clear when they did the sentinel node biopsy after my primary diagnosis so no clearance & I didn’t have lymphoedema after the lumpectomy, during chemo or radiotherapy. The numbness in my right arm started after I finished treatment & about 4 months before my metastatic diagnosis. The straw that broke the camel’s back was a strange episode that felt like a strong pulsating sensation circling through the right side of my face, neck, shoulder, arm & hand. The neurosurgeon said this was likely a mini (or sensory) seizure - shocked as I’d never had one before then. He reminded me that the left side of the brain controls the right side of the body & vice versa which, of course, makes sense. Apparently, the numbness is not lymphoedema but is a head injury as a result of the larger tumour. I tend to agree considering all that happened after my brain surgery. The arm hardly ever had swelling once I was able to move it again. Only slight tingling now but it can get very heavy often as though I’m carrying 3x its weight & it affects my balance. The loss of use & the bigger seizures happened soon after brain surgery & for one day only. They had to up my steroids & anti-seizure meds. Yes, it can drive me nuts & progress is slow but I suppose my situation could be far worse. I had a great neurosurgeon & have an excellent oncologist & physiotherapist so I’m confident it can improve.
Hoping I haven’t confused you too much & this proves useful. Apologies if it hasn’t been, I tend to waffle. ? Really hoping you can get it resolved again. Please keep me updated.
xxx
Hi Bottyboo,
Welcome on this thread, lovely to hear from you.
just had a look back at your radiotherapy experience, as you mentioned your hand.
i have got lymphoedema…realise you now have been told you havent. I also had full node clearance too.
reading your posts brought back my rads experience too! I used to be so scared that other bits of my body would get rads by mistake!( In fact my liver did get a dose or two and I later needed a partial hepatectomy as they queried cancer, but thankfully it wasnt)
Anyway, I used to ask lots of questions but most of the ladies were very rushed or a bit brusque so they werent answered. Much later, I realised that these ladies perhaps had had less training in dealing with patient’s anxiety.than the bcns have…I thought things had improved since
Re your hand…I can see how annoying/worrying that would be for you…,in your position, I would speak to my surgeon if poss as he would definitely know if the nodes clearance might have affected a nerve which serves the hand…or ask my onc, as they too might be able to help. If you think about it, your surgery wasnt that long ago and surgery can disturb/affect nerves as they cant avoid cutting through a few. …time can sometimes improve a situation as healing takes place.
Good luck with it tho, would really love to hear how it goes,
Moijanxxx???
Hi Carolina,
Just chacking in to see how you’re getting on? Hope you’re making progress with a satisfactory treatment plan.
Thinking of you.
Lissa x
Yes Carolina, have been wondering how you are…love and hugsxx
we are all here for you.
Moijan
Hi guys
I’m fine thanks
Still headaches which are kept away by steroids but really want to come off these as I’ve been on them for weeks!
Start 5 days of wbr today praying it works. Off to Bali next month I’m mad I know but her. Travelling the world this last year and won’t let this stop me xxx
Seeing my team tomorrow to talk about my scan and current treatment herceptin etc… hopefully I can still stay on it and it’s working! Not sure when they will scan me- not sure how long it takes to show up any decrease on an MRI. I also have surgery as an option afterwards but it might be I don’t need that. Not sure what their thoughts will be on me going away though but oh well! Yes I have my family coming with me this week. Praying that I don’t suffer too badly x
Hi Carolina,
So glad to hear your wdr is imminent. Praying it isn’t too taxing. I understand the frustration with the steroids but hopefully it won’t be long before you’re off them. Always good to know there are more treatment options available too.
Bali… Fantastic! Something to look forward to… good for you. You are a pillar of strength and your drive to enjoy life as much as possible is great.
Take it easy. xx
Praying that you don’t need to go down the surgery route after your current treatment. I know I’ve said it before, but you truly are an inspiration…it’s a twee phrase, often over used, and some people find it annoying (so I hope you don’t! lol)…but what a woman you are! I know we’d all be very happy to hear that your MRI following wbrt has been hugely successful. x
Not loaded but sold my house and moved in with my dad lost everything I worked for and my independence but I knew I needed the money to travel and make me happy. I’m always grateful and feel lucky I’m aware that not everyone can do this. Since last march when dx with stage 4 I’ve been to Sydney Queensland in oz, sweeden to see northern lights, Mexico at Christmas and hopefully Bali. It’s been amazing and it keeps me going!
Love to all xx
Zena i love emirates went to oz with them first class (bucket list) and going to Bali with them! What a wonderful job. I replied above about my money situation I don’t mind people being nosey! Of course i can send pictures x
Wow amazing you go lady - live it all,every drop !!
Had to carry a sliver tray round everywhere in those days (1998) right pain in arse - let me know if they still do ?
I flew 2 falcons once in first class the guy had bought them a seat each - they just sat there with thier hoods on …,crazy !!
I don’t know anything about what’s happening to you but I wanted to talk to you as just smiled thinking of you off and about with that going on … made me get off my sorry arse today and do some bits as I was feeling really low xxxx
Your wbr will go well and so will MRI ( hate that machine) … and you’ll be sending us a pic of Bali as soon as Hun , after your emirates flight you lucky thing ? X
Ha no silver trays now but they are lovely still my fav airline!
Ok so did my first out of 5 today and it was ok… x
Wonderful Carolina, and yes you are inspirational. Glad the treatment went ok and …only 4 more now.
am a bit envious of you going so often to oz, I emigrated there in my 20s, have been back once but now tied to an i/v two weeks out of three! Love travellingxxx
keep us posted. Great stuffxxx
Love and hugs, Moijanxx???
Just got back from the onc and have chemo tomorrow at 12.0 …
have been thinking about you Carolina and fingers crossed today has gone as well as yesterday xx
i must admit, never felt much different after rads, but guess you might be a little tired?
how long does a wbr session take?
Pmd you yesterday…do pop in and see me if you are around …I will be the person with my arm in the sink!
am usually there a bit earlier in the restaurant and also afterwards in there. Came down yesterday to see if I could spot you.
Keep in touch xxx
Moijan?
Hello Truffle,
Welcome to the site & this thread. Sorry to hear about your liver & brain mets but it sounds like there’s a treatment plan in place, thank goodness. Don’t worry about your punctuation. I have similar problems with my arm so I understand the difficulty with limited arm use & typing. I just take my sweet time… I mean I’m really slow, haha. Hope your arm functionality improves.
Glad you’re finding some comfort from the stories on here. I feel the same way… all of them have given me hope & everyone’s very supportive so please keep reading.
Agreed, we do need a cure!
Best wishes, Lissa xxx
Truffleshuff!
So glad you eventually,found this thread…sorry if my link wasn’t that useful
So you have at least two buddies now who know precisely how you could be feeling
Please do come back all of you when you can… as I am pretty constantly thinking of you all and will sign post any newbie brain mets to this threadxx also if it isn’t used it will sink again eventually
and be difficult to find for any newbie bm
Ladies
Lots of love and good luck with wbr Carolina and Truffle xxx
Moijanxx